Beth and Madi Vanstone are making a difference — and it shows.
The mother-daughter duo from Bradford was named among 12 "changemakers" in Canada’s rare disease community Nov. 20. The official campaign, called I Am Number 12, was launched by 13 Canadian rare disease organizations, in partnership with pharmaceutical company Takeda Canada.
This campaign will attempt to raise awareness of the one in 12 Canadians expected to be affected by a rare disease in their lifetime. And it centres around a group of people who represent the diversity of the rare diseases community. They are patients, caregivers, clinicians and advocates trying to ensure equitable access to diagnosis, care and resources.
“Our goal is to bring awareness to Canadians that rare is not that rare and Canadians need a rare disease strategy,” she told BradfordToday in an email, noting each changemaker had their portrait unveiled during a launch event at the Gardiner Museum in Toronto.
For more than a decade, Beth has been advocating on behalf of cystic fibrosis (CF) and rare-disease patients after Madi was diagnosed with CF at the age of eight months in 2001.
There are thousands of rare diseases that affect patients, their families and caregivers across the country, Beth said.
"This campaign is an important reminder that rare disease does exist,” National Gaucher Foundation of Canada president Christine White said in a media release. “It is all around us and we will all likely know and care for someone who is impacted. We are proud to stand in solidarity with our community. Together, we can raise awareness about the challenges of living with rare diseases and advocate for equal access to healthcare.”
An estimated 7,000 rare disorders exist worldwide. On average, it takes six to eight years before a patient receives a correct diagnosis. In this time, they will see an average of eight physicians and receive two to three misdiagnoses.
In Canada, most treatments for rare disorders get approved up to six years later than in the United States and Europe, the release said.
“We are both thrilled to be included in the campaign,” Beth said. “We have continued to work to support the rare disease community since our initial battle to access Madi’s lifesaving drug.”
Earlier this year, the federal government announced measures in support of the first-ever National Strategy for Drugs for Rare Diseases, with an investment of up to $1.5 billion pledged over three years. However, little progress has been made on the matter since that time, Beth said.
“Our joint goal is to increase understanding of what it's like to live with a rare disease, bring better health and a brighter future to all patients by addressing areas of high unmet need," Takeda president and general manager Rute Fernandes said in a statement.
The Vanstones will be attending the Canadian Organization for Rare Disease conference in Calgary, Alta. at the end of this month.
As part of the related 12 Days of Giving initiative that begins Nov. 28, the campaign will spotlight a new changemaker each day. For more, visit the @IAmNumber12CA Instagram account.
— With files from Kristen Brownell
